Many of us have experienced this pain and anguish on their skin: seeing our parents - those same people who have often guided us in life - "getting lost" inexorably due to neurodegenerative disease. It is an increasingly frequent experience as the average life is lengthening, but still too often unspeakable. Unspeakable because whoever is the victim in the first person loses the ability to talk about it and because whoever is next to the patient loses contact with reality, finds himself in a limbo in which disease is the only centrality.
The journalist Francesca Magni perhaps found the courage, perhaps the strength, certainly the painful awareness of telling her days and nights alongside in the book "I don't know the night" (Bompiani, 2022, pp. 240, also e-book) to his father , suffering from Alzheimer 's. Days and nights start suddenly, with a night phone call and a run in the dark before finding yourself locked in the walls of the house to take care of your parent, once an authoritative doctor and a man full of life, then more and more distant as the disease consumed his awareness. Outside, meanwhile, the pandemic apparently suspended the flow of time which in Francesca Magni's house was instead marked by the rhythms of care. The father returned as a child and in need of new care and attention, while the author found herself having to deal with her own bewilderment and with the need, too often underestimated, to ask for help in everyday life from other women who had come from afar. Meanwhile, the anxiety of permanently losing that intimate sharing that binds us to those who are parents was growing.
It is therefore difficult not to define intense and poignant a book as “I don't know the night”, a story that involves for its intimate spontaneity. A spontaneity that we find in the words of Francesca Magni when we ask her why she decided to put down her experience alongside Alzheimer's:
“The book practically came about by itself. In the days when I looked after my father, my days were turned upside down. It was at the beginning of the lockdown and managing everything, including work, was very difficult. I found myself writing in the moments, not always frequent, when I was able ... maybe between one caregiver and another who took care of looking after my father when I wasn't doing it. The book was born like this, alone, while I was in a sort of vigilant trance ”.
How did the idea of publishing what was originally an intimate, personal story come about?
“I had my husband, my first reader, read what I had written, and he immediately pushed me not to keep what I had written down to myself. I had a contact with a literary agent who had shown up after reading my book dedicated to dyslexia called The Child Who Drew Words. She told me to call her if I wrote anything else. I sent her the manuscript and she fell in love with my text. In addition to the decision to publish there is also a more personal reason ".
Which?
“I strongly believe in the value of testimony when you live in difficult situations like it happened to me. For me, one of the values of writing is to tell others that they are not alone, they are not the only ones to have lived that dramatic experience that they may find it hard to talk about. And a way to make people feel less alone and to feel less isolated in turn ”.
Illness inexorably and in many ways generates loneliness ...
“That's it. It is no coincidence that when someone who has had an experience similar to mine reads the book and then contacts me on Instagram, long-distance relationships of enormous intensity are born. This gives us a sense of the need that many have not to be alone, not to feel abandoned. It is not easy to be close to a sick person, but even those who take care of the disease often feel rejected, isolated, abandoned ”.
Why do you think people are so afraid of illness and suffering?
“I asked myself about this issue, but I haven't found a definitive answer. Perhaps we fear the suffering of others because it questions us deeply, forces us to ask ourselves if we are doing enough, if we have done everything we could to make the relationship with the person in front of us vital. The answer is almost always no. We never did everything we could. And then the disease confronts us with our transience and with the transience of the people around us and whom we love. These are issues that our society today shuns. One thing that struck me is how for this book I was almost always contacted by Catholic newspapers and magazines. Well, I am not a believer and my book does not look at the religious dimension, but obviously suffering is more easily faced in certain areas. A good part of our society shuns it, it is useless to deny it ”.
But in a story like the one told in your book, is there room for emotions such as joy and hope?
“For the joy absolutely yes, also because Alzheimer's drags you into a reality so crazy and surreal that sometimes you can't help but laugh. Hope, on the other hand, is something more distant from my experience. Perhaps it is clinging to the possibility that in the future a cure will be found for a disease about which very little is known and about which very little research is done ”.
Rereading what you wrote, after some time, which emotions predominate?
“I don't know… I don't know how to answer you. It is a question that still paralyzes me ”.